Ok folks, we have a lot to cover in one blog! Let's start with the Marfan Awareness event that successfully occurred on March 10th. God not only allowed us to reach our monetary goal of $3,500 for Danny, he allowed us to surpass it! We made a grand total of $5,700 from donations and auction items the night of the event and the number just keeps growing. There have been individuals who heard about the event that have been donating after the fact, and other marfan moms who have been raising funds for Danny and his mom Sarah as well. Sarah has thanked us over and over for everything that has gone on, but it is really all of you, the "donatees", if you will, that we have to thank! THANK YOU! Thank you for coming to the event and/or donating money, time and prayers for this event. It has meant more than you know seeing so many people showing so much support for something very important to us, as parents of a child with Marfan Syndrome. We are SO excited that we will be able to meet Sarah and Danny IN PERSON this summer at the Marfan conference in Chicago. Danny will get to meet and be thoroughly examined by all the "big" marfan doctors and his mom will be able to leave knowing she has seen and received care and advice from the very best! I know that this means the world to Sarah and we could not have done it without all of the support we have received throughout the past few weeks.
Brett and I had the opportunity at the event to share Emri's story so far. It felt good to be able to tell it and have it well-received by many. It was intimidating indeed to stand in front of 150+ people and share many intimate details of our life and journey with Emri, but we pray that God used it and continues to use it for his good purpose. There have been many individuals that have responded to Emri's story saying things such as, "wow, I had no idea it was that serious," or "I can't believe all the things you have been through with Emri!" To be quite honest, I felt a little relief being able to let the world know what it takes to be the parent of a child like Emri, but I also want to respond to these comments with how I really feel being Emri's mommy. I can't imagine having a more precious child. I feel more blessed than I ever have in my life to be the mother of a child so unique, so sweet, smart, and incredibly funny. That girl puts more smiles on my face in a day than I can count and I truly, honestly wouldn't want it any other way. Yes, there is a lot of responsibility involved and tough, tough days that we go through together, but I wouldn't trade a second of it. I know that everything Emri has already been through in her 21 months is shaping her into the beautiful person God intended her to be. I feel like kids that go through trials early on in their life already, learn even faster that life is a precious gift, not to be taken for granted. Emri has already been called a "wise old soul" by many, some she only just met. She is so special, such a blessing from God.
Before I move on to the next subject there is an apology I must make to everyone who drank coffee at the marfan event... Those of you who thought they were drinking decaff...you weren't. Those of you who wanted your kick of caffine...sorry- whether or not you thought you got it, you didn't. Yes, it's true-the signs were switched. Shortly after the event, while cleaning up, the gruesome discovery was made. I am not going to lie, we all shared a good laugh thinking about all the poor people that would be laying awake all night thinking they were just "over-inspired" by the whole event...I do apologize.
The next subject of matter is Emri's spine. We had a spine appointment for Emri on Thursday to check in on her kyphoscoliosis (scoliosis and kyphosis) measurements. As it turns out, they are in surgery range already. Emri's lower scoliosis curve is now beyond 50% without traction (stretching Emri for the x-ray) and 48% with traction. He kyphosis degree is still beyond 60. These numbers have grown big enough to talk surgery dates. Surgery will be in Baltimore by Dr. Sponseller. We have seen Sponseller a number of times already and have known that he would be the one surgically repairing Emri's spine when the time came. Well, the time has come. I can't say I'm trilled about it, but I know it has to be done. The big concern that lies before surgery is Emri's weight. She is still under 20 lbs at 18.7. Her appetite has been increasing as of late, so we are hoping we can completely avoid a g-tube (tube inserted directly into the stomach for feeding) before surgery. We want Emri as big and fat as possible before undergoing a serious surgery. We also want to grow Emri up as much as possible before surgery because following the initial rod implantation, Emri will need a lengthening surgery every 9 months to a year in order to have the rod grow with her spine. Anesthesia given that often isn't great for kids and we want as little of it as possible. So all that being said, we are anticipating a surgery in the next 6-9 months...although it could be sooner if we decide to combine the conference and surgery in one trip. Please pray for this.Emri has had a heart appointment since last blog as well, and we are grateful to announce that the aorta and mitral valve prolapse has remained quite stable. This is something that we are extremely thankful for...we would really like to focus on one surgery at a time!!!
The last order of business is that...........
EMRI IS GOING TO BE A BIG SISTER!!! Yes, it's true! We found out we were expecting on Feb. 22nd and we are beyond thrilled to be able to make this announcement:) Emri doesn't quite get it yet but is correlating the word "baby" with the idea of mommy being sick. I am, once again, very sick with "morning" (haha) sickness. It lasts all day and doesn't allow room for much fun in Emri's world. Emri has watched a few more movies than I would like to admit to, but it is truly the only way to get through the day for me sometimes...poor kid! We are due November 4th, which puts me at about 7 weeks along. I would like to mention that although I was already pregnant at the event, I was NOT sick. God spared me until the very next day! THANK YOU GOD! We are very much looking forward to meeting our little sweet potato next fall and will keep you updated with lots of ultra sound pictures! We even get a 3D ultra sound this time!
So, there you have it-all the news you can handle:) Thank you once again to all those who helped with the event, supported it financially, and to those who prayed for it's success. We felt God's blessing on the event throughout the entire process. If you have already been prayerfully supporting our family...thank you. If you are interested in beginning to pray for our family, thank you also. God takes such good care of us and we are so thankful to feel so supported by so many. I hope this blog finds you all well...until next time...~Erin~
